During the day... December 2009

My days with Makenzie were spent pretty simply.
Anytime there wasn't test being run, CPT being performed, stats going crazy so nurses and doctors trying to figure out whats wrong, talking through rounds, being observed, answering calls, talking to insurance... We read a lot of books. We talked. We watched TV. I would play with toys with her. I would tickle her arms and legs. We had lots of visitors so there was always someone stopping in to say hi. As simple as our days might have felt they were the very best moments with her. Slowing down and really taking in each and every moment with her. After Ryan and I decided we would take her off life support on December 13th I made it a point to do as much as I could in the time I had left. Telling her stories I imagined telling her in life. Everything I could think of. How her Dad and I met to our marriage to having her. I told her the good stories and our struggles. I told her what I wished she would do in life. I told her my views on many issues in the world. I talked about what I imagined our family looking like. I told her what I thought heaven was like. I told her with our reality what our future will probably look like without her. I made her promises. I asked her for a few favors.
Every time I talked to her she just laid there watching me. Sucking her fingers. Listening. Sometimes smiling. She didn't smile much by that point so when she did I knew I said something silly or dumb. Which I do a lot so I am glad she could see how crazy her Mum is.
Every morning I would wake up and go to her bed before I had to leave for the morning switch.
I would ask her if today was the day she wanted to go to heaven?
I never got the feeling it was today. and I was always relieved. Not until it was. That day I knew.
We picked that day so we could have the doctors, nurses and Respiratory Therapists there in the room that we wanted. They knew us. and they would make sure Makenzie went in the most peaceful way. Just how we wanted it. We knew they loved our little girl and that they would take care of all of us. We had to kind of work around their schedule which is how we came up with a specific day and time. It was sickening to have a date.
To know when she was going to die.
As much as I didn't want to lose her.
Much of the sadness didn't come until after she was gone.
Our focus was so much on her in those moments. and she was miserable.
Every.Single.Day there was a new issue.
Something was failing in her body and she was dieing right before our eyes. In my mind I was looking forward to her freedom. I wanted nothing more than to give her some relief. I prayed so hard for God to take away her pain. I prayed for her to have some comfort. It was the worst feeling watching her suffer to death while I couldn't do anything.
She tried to scream and would cry every time they had to perform the CPT and cough assist. I had to hold her in place so they could do their job. I would sit there and cry. Holding her and whispering that it wasn't going to be like this forever. I would pray for her to have comfort and for angels to hold her.
Her GTube was a constant issue so she never was getting enough nutrients. We did the GTube because it was the best way to get food in her since she was so underweight. Her nissen wasn't working which was causing her to throw up which is very dangerous because if it gets into her breathing tube and into her lungs it will kill her. Her GTube wasn't venting properly so she was getting giant gas bubbles that they couldn't get to go away so they would have to stick a huge tube in her nose to pretty much suck out the air and put a feeding tube in her other nose to get food back in there. This is just a small piece of it. and everything was something for her. Something that hurt. Something that made her more restricted to the bed and less likely for me to hold her that day.
She cried a lot. I will never forget those tears running down her face and no noise coming out.
She was losing more and more mobility. Her legs didn't do much. Her hands were weak but she was able to get them to her mouth still. We tried to cut binkies to fit around her breathing tube. She like them some and would use them but loved her fingers more. That was new since she got to the hospital. She was a binkie girl before.
Like I said she didn't smile much. She didn't laugh as often. She tried to sleep but didn't get much rest. I did everything I could to make sure she was as happy and comfortable as possible which meant the nurses were probably really annoyed with me. I hate being that person but I needed to be her voice and I knew her better than any machine. I knew when she was struggling even if the alarms were not going off. By this point I made it a point to hold her everyday. It was really hard for me to hold her because her stats had to be perfect. She was pinned to me and I was pinned to a chair. I couldn't move. I would have sat there still. Never moving if I could. I asked all the time and unless it was the right time they would tell me no. When I could hold her It was so hard to hold her but not really hold her. I wanted to just snuggle her. Feel her body next to mine. Not with pillows between us. Although I wouldn't trade those moments for anything. They were the absolute best. I know how lucky I was to be able to hold her. That doesn't always happen. I wished I would have asked if I could lay next to her in her hospital bed. I felt silly thinking they would say no. I regret that so much. I have since known people that said they did that.
If heaven forbid your child is ever in the hospital- don't be afraid to get in that crib and lay next to them. I laid next to her one time. Days before. During pictures and I cried the entire time. It had been over a month I had been able to feel her body like that. It had been so long since I had been able to feel her everywhere. It felt amazing. I wish so much I had done that more. I think it would have helped us both so much.

I did as much as I could to still feel like her Mum. I was the only one to change her diapers and her GTube dressings. I painted her nails and I changed her leggings everyday.
It was the little things that I needed. but they were not enough. I had very little say over what we could and could not do with her. It was necessary in order to keep her alive. I had to follow the rules. but I felt powerless.

I was extremely paranoid about germs. They cleaned her room and I cleaned her room. I was a stickler about washing and sanitizing hands. Which resulted in me having constant sores. My hands bleed daily. but they were clean. She was very susceptible to any sickness and even the smallest cold could kill her.

Our days were simple in the sense we sat in the same room. Looked at the same 4 walls. The same balloons. The same pictures on the wall daily. We didn't get fresh air or take some walks. but they were full. We were surrounded by so much support and love from the staff at the hospital. Our friends and family. Makenzie always had a new toy to play with from someone that dropped by. I am thankful we had so much time to just look at each other. Since having Tracker I didn't realize how little anyone does that. There is so much to do in a day. 20 minutes of just watching him seem like a lot of time. but I spent hours doing it with Kenzie. Hours just humming songs and telling her stories. Hours kissing her face and imagining what her new life would be. Dreaming of her world with angels. Hours begging God to comfort her and take this pain away. Hours watching her breath. When I say I slept there. I mean I took a night time nap. It was hard to sleep. The machines were consistently going off so I was always jumping out of bed to see what was going on. So my naps were usually 4ish inconsistent hours of rest. They were enough then. But the rest of those 20 hours a day was spent just with her. Focused on her. I am thankful every single day that I could be there. That I didn't have to leave. I cant imagine what I would have done if I had another child to think about or work that wasn't so understanding. I really feel blessed.
That time was meant to give us time.